This week, birdies from northern Ontario to Florida met online for BUSNA’s first gathering. According to the feedback, the opportunity to chat was much appreciated!
BUSNA’s President, Christine Griffith, started the Zoom with a brief history of BUSNA and a few words about her own Birdshot story. Board members were introduced, and a few of them spoke briefly. What followed was a candid conversation that centered around two specific topics, diagnosis and treatment.
After a dozen or so guests shared their birdshot experiences it was clear that each of our journeys are different. For some of us, diagnosis took only a few days. Most, however, endured months or years of symptoms before learning what was affecting their vision. A couple of women who participated in the Zoom have been living with Birdshot Uveitis for over twenty years, and one woman is expecting her diagnosis this coming Friday.
The conversation brought home the fact that doctors use a wide arsenal of medications, surgeries, and other treatments to help their Birdshot patients; almost as many treatments as the number of people who spoke! Medications that worked well for one person sometimes caused serious issues for others, and sometimes a medication became less effective with time. The overall consensus, if my impression is correct, is that we should ask our doctors questions and be ready to change course, if needed. Birdshot uveitis exhibits differently in different people, and there is still much to learn. Never the less, we enjoyed the opportunity to share and listen to others.
BUSNA is planning two more virtual gatherings this summer, in case you missed this one. On June 22nd at 7pm Central time and 6pm Mountain time, BUSNA will host a gathering for birdies living in those time zones. Another event on July 13th at 6:30pm PST will take place for those living on the west coast. Registration for these events will open on June 1st and July 1st, respectively.
To those who helped make our first gathering a successful one, thank you, and best wishes on your birdshot journeys! To everyone else who would like to be part of our supportive birdshot community, please consider joining BUSNA. We can help each other navigate our birdshot uveitis!
Birdshot Uveitis Society of North America (BUSNA) is a volunteer organization comprised of persons diagnosed with Birdshot Uveitis. It provides information and support for North American patients and it raises funds for Birdshot Uveitis research. For more information, please visit our website.